Almost half of Canadian households that have children with celiac disease are struggling to afford gluten-free foods, according to a new study led by the University of Alberta.
In a cross-Canada online survey of more than 650 parents whose children are on a gluten-free diet, 47 per cent reported experiencing food insecurity — the inability to access it affordably — and of those households, more than 30 per cent are grappling with low to very low levels of accessibility.
"Our findings are alarming, because even households in the $100,000 range experience some food insecurity, so imagine how hard it is for families with lower incomes," says Diana Mager, a registered dietitian and professor in the Faculty of Agricultural, Life & Environmental Sciences and the Faculty of Medicine & Dentistry.
"They're faced with decisions about paying rent versus feeding their child a healthy diet," says Mager, who is also a member of the Women's and Children's Health Research Institute (WCHRI).
Along with that, the issue of affordability meant that children with celiac disease couldn't always adhere to a gluten-free diet, eating fewer fresh fruits, vegetables and gluten-free grains, and consuming more processed gluten-free food, which can lack essential vitamins and minerals.
Parents who expressed concerns about availability and affordability of gluten-free foods, which cost more to produce and are higher priced, were more likely to report that their children didn't adhere to their diets, the researchers found.
The dilemma leaves parents "with some very tough choices, considering that a gluten-free diet is the only treatment for celiac disease," says Mager, whose co-authors on the study include U of A professors Justine Turner and Sven Anders, and Xinyi Wang and Rita Jiang, masters of science students in human nutrition.
The disease is a disorder that causes the body to overreact to gluten, a protein found in food such as barley, rye and wheat. It damages the lining of the intestines, preventing proper absorption of important nutrients, and requires a strict, lifelong gluten-free diet.
Conducted with researchers from the University of Calgary and The Hospital For Sick Children in Toronto, the multiethnic study is the first to identify the possible causes influencing gluten-free food insecurity in Canadian households with children who have celiac disease.
Risk factors include having a lower income, renting instead of owning a home, living in rural areas, being a single-parent household, and having children with additional dietary restrictions, the survey showed.
But affordability was also an issue for families not grappling with lower incomes and food insecurity, Mager notes.
"A majority of surveyed households, 92 per cent, reported they were spending much more on gluten-free foods over the past 12 months."
About 12 per cent of parents reported that they had to find ways to deal with the high cost of gluten-free foods, including eating less or poorer quality food themselves, and cutting back on entertainment and family activities.
The findings show an "urgent need" to improve existing government policies that can make gluten-free food more affordable to families, the researchers suggest in their paper.
Although Canada does have a tax credit for gluten-free food products, it's complicated to calculate, parents reported.
"The family has to collect receipts for each food item, and then they have to calculate the incremental cost differences between foods that are and aren't gluten-free. After this, only a small percentage can be applied as a tax credit," Mager notes.
Nor does the credit directly benefit households with low incomes below the tax threshold, "who are also the ones at higher risk of food insecurity," she adds.
Additional policy approaches could help close that gap, Mager says, noting that Celiac Canada is petitioning the Government of Canada to consider a direct $1,000 tax deduction for each family member medically confirmed with celiac disease.
"We could also look at other measures, such as a child tax benefit directly payable to parents, price caps on gluten-free foods, or even broadening health insurance coverage to include gluten-free food as a medical prescription, something that is already done in the United Kingdom."
Such supports would help ensure stable access to a healthy gluten-free diet, helping children with celiac disease avoid long-term complications such as poor bone health, she adds.
"There needs to be more recognition that gluten-free food is a necessity for this vulnerable population, not a luxury."
The study was funded by the Stollery Children's Hospital Foundation through WCHRI's Clinical/Community Research Integration Support Program. Jiang was also supported by the Stollery Children's Hospital Foundation through a WCHRI studentship, and Wang received funding through the Calgary chapter of Celiac Canada.
